I am not always politically correct. I say autistic. For years I would have to correct people when they would say, “Oh yes, artistic, he is good at art.” I make the conscious effort to say, “My brother Jeff has autism,” but sometimes I forget. Guilty.

Of course autism doesn’t define my brother. If anything, Jeffery can be defined by his big heart, beautiful soul, and giving spirit. Saying he is autistic could never take that away from him, I mean no disrespect, to him, or anyone else on the spectrum.

Leigh says, “Parents feeling sadness and worry are encouraged to deny there is any grief associated with it whatsoever.” Guess what? Siblings also can feel a great sadness and worry. Am I at times sad that Jeff has autism? Yes, but not for my own sake, for his. Jeff has challenges that are unfair and it makes me sad that his life has to be more difficult than most. It is sad to me that he can’t go out without being stared at; or that he can’t carry on a typical conversation, struggling to have his voice heard.

Do I worry about him? Hell yes. When Jeff moved into his group home, a wonderful and difficult experience for our family, I was overcome with such anxiety because I was so unsure of how it would turn out. I worry what will happen when my parents are no longer around. Can my oldest brother Tommy and I be there for him in the way that he needs? I can’t be sure, but I know that we’ll try our best.

When I was young and a believer in Santa Claus, I asked for Jeff to speak. To this day, I would give anything to have Jeff ‘cured.’ Should I, and others that feel the same be attacked for that? I would never judge anyone for their stance on the topic.What do we accomplish by going at each other on this issue? As Leigh points out, “by jumping on people for their thoughts and decisions about raising their autistic kids, all we are doing is silencing them.”

I am thankful and inspired by the neurodiversity movement. I think that self-advocates have made incredible strides to raise awareness and speak for those who can’t. I have made connections and friendships with many of these folks who work hard for the greater good of the autism community.

Jeff was diagnosed in 1987. My parents were scared and overwhelmed. Autism? What’s that? When we found other families who had sons with autism, we clung, and held on for dear life. These friends soon became family.

We didn’t have the internet back then, and sometimes we think it may have been a good thing. We had to stick together and hope for the best, working towards the goal of giving my brother the most productive and enriched life we could. Today, there are ‘support’ forums and communities all over the internet. Often times, these are breeding grounds for knock down, drag out fights. People can hide behind these online personas and say whatever they want, while others are able to make connections and that become lifelines. Amazing friendships and bonds exist – I wish there was more of that. It is a blessing and a curse.

Until coming to work at Autism Speaks, I had no clue of the different segments in the autism community. I was absolutely shocked by it. Clearly we were just living in our own ‘autism bubble,’ but I don’t think it was the worst thing. Why can’t we just support and respect each other?

In fact, I never in a million years thought that I would be working at Autism Speaks. I thought that the only way to work in the field of autism was to be a teacher, therapist, or scientist. I wasn’t anti-Autism Speaks, but at the time of inception, the mission was geared to diagnosis and early interventions. We had been there and done that!

But joining Autism Speaks has been an incredible blessing. I am thrilled by the way the organization has evolved and where it is looking to go. The development of the Transition Tool Kit and Housing and Residential Supports Tool Kit are wonderful and that is only the beginning! I am also incredibly lucky to work side by side with people that really want to make life better for ALL people affected by autism. My coworkers have supported me, and in turn my family in ways I never could have imagined.

This past Fall my family along with the other families in Jeff’s group home, participated in a local Walk Now for Autism Speaks. It was with Jeff’s lead that we signed up and I have never been so proud to walk next to someone in all my life.

So there it is. Laid out for all to see. I hope that the autism community can come together for good and respect each other as time goes forth.

In the meantime, I will continue to walk side-by-side with Jeff never losing sight of the past and all that we’ve been through. But I will look optimistically to the future, because Jeff makes all of those who know him better people. He will surely leave this world a much brighter place, for the truth is, he already has.

Click here to download the Sibling Support Tool Kit. This tool kit is for children who have a brother or sister diagnosed with autism. Though the guide has been designed for children ages 6-12, the information can be adapted as needed to other age and education levels. The guide is written in an interactive format so parents and siblings can set aside some quiet time to read the guide together. The intention is to create an opportunity for siblings to focus on their feelings, reactions to their sibling’s diagnosis and get information about autism.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

Ali,
You said it all so perfectly. Why expend all of that negative energy against each other? Everyone of us has to cope with autism in our own way and no one should be judged for what they think is. When we were in our “autism bubble” I never knew people would have to defend themselves to other autism families. How sad! Let’s all try to give our family members the most productive and positive lives they can have.
xoxo Mom

Wow. Thank you. We live in a rather small rural area, and feel so isolated for people who understand. Our oldest has autism, and we have two younger children who are so far quite neurotypical. Last spring I turtled a lot… we experienced that magic age where he’s all of a sudden a big boy, and the differences are brought into sharp relief. I looked all around the internet, searching for someone who would just get it. I found quite a bit of understanding, but was hurt and somewhat shocked at how so many people draw lines and allow those lines to become more important than encouraging and helping each other. I’m sure I do things differently than others, but we have to trust each other and know that we’re all doing the best we can. Thank you again for sharing… I will make sure the toolkit for siblings is available for my 2 and 3 year olds when they need it. :-)

This is somehow similar to my story with my brother. Even though, I live in a different country with different culture .. religion.. etc. I relate to some of your thoughts and feelings 100% This is the human feeling we all share as siblings.. I’ll share this :)

This hit home,one of the hardest things is placing your child in a residental,we know its hard but the siblings its so hard on them and they worry just like we do for the future of the brother or sister. But theres one thing I must say our children are better people because they have to deal with these issues they become more sensitive towards others with any disability.

Oh, I am elated to find this, on this rainy cold afternoon, coming to the library, feeling helpless, powerless, unloved and all alone in struggles, but keeping appearances, trying to read every book I can find, and Aspergers from the inside out is the best so far. If you are good with the computer, I am Vicki lane Marsh. 276 628 1243. That is good with phone. I am so clumbsy on machines and technical items. An idiot savant in art, I didnt speak untill 3rd grade, but I began painting in oils at 8 and never stopped. I memorized hoe to appear to be normal, but at 64, I am so tired and I need help. I desperately need help. I could achieve and survive in art, raised children, but no one writes about being duped and a fool, and how it feels to be bullies and used for sport. To believe others wish to help you while convincig you just need to put them on your deed and they will live happily ever after with you. Where do I sign up for Happily ever after. Gladly, sobbing with gratitude…is there an attorney who wishes a case to make Autism Law with? I was lucky. A police detective called and asked if I was indeed one of his 11 victims, and the others are neurotypicals and know how to go about fighting. One has charged him with Rico, Racketeering and Organnized crime, but she had money and a backer financially, but cruising in the wake of her case should be not so hard as the keel of the icebreaker…bow maybe it is…prow…front sharp. No nautival expertise here, but it is how I see in pictures..as though she is plowing the way, and we each have individual evidence and case, but I will be baglady. I have nothing else but my home, and I cant just paint till I die without a roof. I dont know how to go all over this machine, I just found you on my facebook, and with a wing and a prayer I try to type this out, and I need help. Used to not admit that….but so many many social mistakes, and misreadings…the pain following the trust to betrayal, the shame, the hmiliation, the rush to Barnes and Nonble, find another book…make sense, comprehend, learn how to be someone else…Wells Fargo has made me a mortgage so illegal and preditory and my HUD agent is superb, and she will tell anyone in business language the documents she has to prove it all, but they are steamrolling anf I , trying to forclose on my before the case against the financial advisor who told me sign here. It is a case worthy of Times reporters, and defending autistic persons from unconcionable contracts….I want to be of use to autistic community and a case for legislation is often not th e elements of current interest like Wells Fargo vs the Artist.

A very poignant post, Ali. It hits lots of trigger points. For what it’s worth, as the mother of an autistic adult son, I think one way to ease up on the e-shouting match is to admit the word police are overdoing it on denouncing the adjectival use of the word “autistic.” This word is not the latest model of the mean-spirited “R” word, used for decades to diminish people with intellectual disabilities. Rather, it’s sort of a diagnostic catch-all and I’m not willing to turn it into a weapon to be used against autistic people when it is all kinds of autism awareness that we’re trying to get across to the public. Using it freely should help break down the single “Rainman” stereotype that people seem stuck on. If we embrace the word — just bust it wide open and use it as a learning tool — I think it would encourage people to start paying attention to the wide variety of faces under the big umbrella of the autism spectrum in all its rich variations. This is just one mom’s opinion…so don’t make me come down there;)

Loved your reply, I too have an adult child with Aspergers and you are absolutely right. We just have to keep pushing to burst that bubble, bust that wall of Autism, wide open. We are all struggling and we are all not getting many answers or a cure. That should be our driving force.

Somehow I jumped right over your post before but now that I’ve seen it I’m with Millie…spot on! We’ve created such a complicated minefield of politically correct terms that we, as a community, often use to beat people with who are truly only trying to figure out what in the world is going on with all of this “Not autism/retarded/special needs/looks like/handicapped/etc” kids.

Forever the ability of the races and the sexes to discuss and debate has been retarded (gasp) because people have fallen silent for fear of speaking using less than the most currently accepted terms for things that make little difference. This nonsense causes tons of pain, it polarizes instead of unites people. How I hope that we’ll do better when it comes to our Autistic families…

Ali, you are absolutely right. My son Alex was diagnosed in 1988, so I know what your family went through. There is so much out there now. The bubble as you call it, has been extended to include the internet. I agree with you that many people fight and argue about who’s right and who’s wrong. No one is right and no one is wrong. The same way one autistic person is different from the other, the same goes for what a family did and did not do. It is truly sad when people feel they have a right to put others down. I try to hear both sides and not judge, no one knows what experiences others have. the sad part is if we divide ourselves we will never move forward. There are so many more soap boxes to get on to fight for the discrimination going on in our own country with autism. Let’s not be petty. Let’s stand together in the face of the diversity. Thank you for your input, much appreciated from a sisters perspective. God Bless us all.

Great words. Thanks so much for sharing them. As a mom of two – one with autism, one without – I think it’s so much more important to surround yourself with a community of acceptance and understanding than one of judgement and disapproval. I think we all see enough of that.

One of the bright spots in our lives is my son’s soccer team where all of the parents totally understand if this week it’s Trevor’s turn to have a meltdown on the field and needs some guidance getting his emotions under control – because next week, it maybe someone else’s turn. We need more places out there where we all feel understood and less embarrassed. I would sure like for our own online community to be one of those places.

Though I love the tone of the article, I would argue that the autism community is drowning in a culture of ‘let’s just get along.’ Too often the Jenny McCarthy’s of the world, the lost and ignorant, are leading the charge with ‘feel good’ issues and pseudoscience. We hear over and over, as in previous posts, ‘no one is right, and no one is wrong. Each situation is different.” and that is just simply not true. Some things are right, and others wrong, we just don’t have a clear handle on which are which at this point. But making those distinctions is vital. With an attitude of ‘let’s be happy in ignorance because education can be uncomfortable’ our direction is near certain to remain unclear instead of progressively charted.

My heart hurts for those families with a new autism diagnosis as the misinformation is so abundant online, and those willing to report fallacies as fact are often seen as mentors and leaders as they’re willing to do so with great conviction and confidence. Having a mentor or a leader is not a good thing when they are part of the pathology that infects the autism community.

The debates are tools that will move our causes forward. The dialog. It is how people become educated, and expose and exercise their beliefs and ideas in front of others that may have valuable input on them. But they are coming to be seen as evil as often these discussions come with discomfort. It’s vital that we don’t teach the newly diagnosed families that discomfort equates to unproductive. The vast majority of the things that have added true quality of life for my son and my family have begun with some level emotional/mental/spiritual discomfort for our family.

We currently have no cure for autism, but in the meantime dialog is the closest thing that we have to a universal therapy. Please don’t allow it to go to waste.

(For context, myself and my wife of 25 years have a moderate/severe autistic 15 year old son/only child)

I think you misunderstood what I meant by no one is wrong, quote. To clarify, we as parents siblings and other family members need to keep dialogue. I don’t want to offend. I am just saying from the young lady Liz’s perspective i understand what she means about her brother and what their family did. Her parents and I didn’t have the technology of today, we had nothing. As for Ms. McCarthy, the only reason she can talk is, because she is famous and can call attention with her name. Put even if we disagree, she has the right to voice what works for her as a mom of a child in the spectrum. Dialogue is what keeps us informed. We as the readers take what we agree with and go with that.

I think that I did misunderstand. Thanks for clarifying. And there was certainly no offense taken on my part. I’m grateful for your thoughts.

The issue with McCarthy is many fold, starting with the fact that her son isn’t actually on the spectrum, he instead has a neurological disorder that has nothing to do with Autism. But because she chose to try and pretend that fanaticism was actually intelligent debate massive amounts of money was funneled into the vaccination debate despite there being mountains of evidence against it. As well, we now have way to many unvaccinated children, who, low and behold show a higher than expected rate of autism.

She’s made millions of dollars with her books and speaking engagements all riding on the backs of our autistic kids, yet offers no apologies and states that she will ‘continue to be the voice for autism.” I wonder how much less her own child would have had to suffer had she chosen a logical, intelligent course for his diagnosis instead of a commercial one.

As you say, dialog is crucial, but it must happen, as it is here, in a civil manner, with a desire to move forward as opposed to simply proving one’s ‘rightness.’

Thanks again for taking the time to respond…I look forward to your thoughts.

Sometimes I think that the blogosphere lends itself to incivility. I have been so busy getting my kids through high school, and through college, (and myself through college), that I have lost track of the controversies in the world of autism. But now having time to read and research, a lot has happened. (I had no idea who Jenny McCarthy is and why everyone was so mad).

Ali – we love you! Your thoughts and insite as a sister about autism is so helpful to those families living with autistim. You also have a big heart! Jeff has helped us also grow, learn and love unconditionally. Love always, Aunt Janice

I would add it that we also need to see more civility, in the form of open minds, from the research community. Often I see arrogant dismissals of the all too real challenges our kids deal w/ an on a daily basis.

Just 10 yrs ago parents I know were asked to participate in a “false memory” study about regressive autism. Meaning parents were making it up.

We regularly see researchers testifying about severely autistic children in vaccine court- arguing that adverse vaccination reactions do not happen and do not contribute to autism. Surely there is a less indefensible way for these people to earn a buck.

GI symptoms and the severity of the problem were ignored until recently. Parents had to literally force the issue onto the research community.

It should not be this difficult. Civility needs to come from both sides of the equation here. We need researchers to listen more, talk less and spend more time w/ our families and less in labs.

I’m so happy that the sibling perspective is gaining more of a voice. For a long time, I simply thought there weren’t any other young adults out there who wanted to talk about their experiences! The sibling dynamic, especially one where a sibling is on spectrum, is very fascinating because 20-somethings who have a sibling on spectrum are at this juncture where they are realizing the magnitude of what the rest of your life really means. It really is anxiety-inducing. Just gotta keep on appreciating our sibs and the enrichment they bring to our lives!

Very well said, Ali. Sadly, the lack of civility you describe is not isolated to the autism community, but extends to the larger disability community as well. Not unlike the current political climate, I think many people become so enamoured with their own points of view, understandably influenced by their unique experiences, that they fail to recognize and respect that God may have put others on a different walk. Our walks can in fact run parallel without us having to trip each other, as though there’s a competition we’re trying to win.

I don’t think people who refuse to define a person as “autistic” are being “politically correct” as you say. They are being “grammatically” correct and sensitive. People are not autistic. Behaviors are. People have autism. Just like people have cerebral palsy, they are not spastic. It IS worthwhile taking the trouble — the very small effort — to speak about people living with autism with sensitivity because in my experience, people who do not live with autism in some way and see a person they call autistic — well, that’s all they see.

So much about autism is hard. It ISN’T hard, however, just to make that one small change in the way you refer to a person.

And that subtle difference helps them see the person first. I’ve experienced this myself many times. Do I correct people, no. Not unless they’re on my IEP team, where I have that right. I just say in the course of conversation, to someone who uses the word is autistic (e.g. is he autistic?) I will say, oh, yes. My son has autism. In my experience their perspective almost visibly changes. Also they stop referring to him as autistic. A subtle change — a big difference. I find the term autistic as a term referring to a person is dismissive and does not see the whole person. It simply is not enlightened.

Your post was touching in what you shared about your brother — and we all have touching stories of sacrifice to share — but you did not really not address the blog post you referred to other than the autistic/autism issue. You kind of side-stepped that and told your own story. Like I said, your story was meaningful, but that was not the promise of your post title. As a social media manager, you know focus is important in blogging and you have to deliver on the promise of a subject line or title.

I think the blog post was more about division in the autism community and “why can’t we all just get along.” As a mother of a child with autism, I have witnessed this and experienced it first hand, and I think it’s too simple to just wonder why it exists and hope the band-aid of good will will cover it. There are very good reasons for the visceral way people respond to differences that bear examining.

First of all, we can’t just all get along because the autism community is VERY diverse. Our needs are different. Our belief systems are different. There is no big umbrella covering us all. That may work for fundraising and “walks” and marketing. But in real life — in the school room, in therapeutic environments, at home, in research, and in the community — the way autism impacts families is too different to lump us all together. I think we do our best — but for example, we had a hard time getting accepted in our autism community even for play dates because my son is verbal and expressive but not HFA/Aspergers. Autism defines low-incidence. And a lot of parents have a hard time dealing with that.

You wonder why there is anger on boards and forums. Well, for one thing, it’s one of the few places where parents have a voice, and yes, they are angry. Autism walks happen on one day. Anger is every day. People are sick and tired of being taken to the cleaners by charlatans and doctors who offer them false hope of cures or treatments that don’t work and that can even be dangerous. And there are others who invest in treatments and invest their life savings and homes and sometimes that’s all they come to see — the treatment. Their whole lives revolve around it and soon the child is a project and not a child. We’ve all seen that and we are all angry about it to varying degrees.

Many parents I know have spent many thousands of dollars. There is very little government oversight of whether approaches are working or not. It’s not like the autism groups for which all this money is raised take a stand on anything, either, when it comes to treatments, approaches, or research. Everything is “okay.” Either that, or you have groups that rigidly dictate one behavioral approach that frankly does not work for every child, as if there was such as thing as “one size fits all” when it comes to autism. And where are the standards? Anybody can become an “autism” therapist w/ little to no training. There is an outfit here that purports to train children with autism how to play the piano. After being on the waitlist for months, I finally got to talk to a “teacher.” It turns out she does not know how to play piano herself. I asked if she could play even one song on the piano — should couldn’t. This is typical. Parents of autism — getting tired of this B.S. Desperation is one thing; ruination is other. Parents are sick of being exploited. And funds get diverted from real approaches and solutions that could help. So, yeah, people get angry, and people should. Pseudo-science doesn’t happen in a bubble. It hurts all our kids. If it was happening to this scale to kids with cancer, you’d better believe people would be angry and reactive about it. And anger can be a good thing. Yeah, rudeness is not a desirable thing, but anger can also inform and motivate change. At least the issues are getting raised and exposed, when they need to. It has its place.

I am all for civility but on the other hand, I understand it when it doesn’t happen.